Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Precipitous; the Edge of the Year

I am not immune to the cultural pull towards using New Year’s Eve and NY Day to contemplate and make plans and resolutions, yet I also know that really, nothing has changed and that were I to ask too much of myself, it would all simply end in failure. To some degree, then, I try to think in terms of “continuances” rather than “resolutions.”

Easy stuff first, I plan to continue to do those things that I know are good for me, but that I must also still be resolute in my commitment.

Massage is the easiest one. I have set the tone and made it clear in my workplace that I will not miss my massage for any reason.

The Shrink. I did not intend this to be a long-term engagement, but it helps. It gives me somewhere to talk openly about my feelings about having EDS, it gives me tools to better care for myself, and it’s a space I’ve made that I don’t want to give up.

I want to continue to be mindful that I do not have to show anyone the light, I simply need to BE the light. They can choose to see it or not. An example of this would be my urge sometimes to shake someone who does not see the terrible behavior and dishonesty of a mutual friend and my own ego-based need to Make Them See. Instead, I need to remember that *I* can see, and I will not hide that. The rest I have to let them find on their own. They will be the ones to tell me if they can be a big part of my life or a little part.

Other, more difficult things:

I try very hard to balance my need for friends and socialization with my needs for rest and time alone. It’s easy when I am off, as I am now, to lunch and have coffee and message and make plans. It’s harder when I am working. I have made a new friend who has also had a long-term illness and she very much understands my limitations, which is nice. Because she’s a new friend, though, I want to spend hours and hours with her. Balance, grasshopper, balance.

Art. What is my deal with art? When I go to my studio I look longingly at the drawing table and then I pick a new sewing project. Lately, part of my hesitation is that I am worried I am losing dexterity. I have been experiencing a lot more pain in my hands and wrists recently, and I know my handwriting (which, naturally, has always been perfect) is slipping. So I worry about finding out I can’t draw. But that’s also bullshit, because as true as that concern is, it affects sewing just as much, and I haven’t stopped sewing at all. I’ve actually sewn more. It’s that same old roadblock that I cannot seem to consistently scale and leave behind. What is it? I still don’t know. Maybe 2015 is the year when I’ll figure it out.

Finally, I go into the new year with a new symptom that I’m worried about. Yesterday I nearly fainted while sitting at my sewing machine. It was clearly a cardiac related thing; my heart “whomped” really hard in my chest and I got that gray tunnel vision and felt my blood withdrawing from my hands and nearly went over. Then it passed. My mom says this has happened to her, so I don’t guess I’ll die, but I feel like even with all those things up there that I’m doing to take care of myself, I don’t have a lot of room or flex for anything else. Not that I have a choice, not that it isn’t how progressive, complex disorders work.

Despite that, I will still be here for 2015, still have a job, still be able to work as an artist for as long as possible. I hope the year is full of good things for everyone.

Like this:

Related

About Guenevere

I am an artist, a stitcher and a costume designer expressing myself through design, costuming, sewing, drawing and teaching. I also have Ehler's Danlos Syndrome, Type 1, and suffer daily chronic pain, degenerative changes to my joints, IBS, POTS and likely MCAS. Life is one big picnic.